I find that google scholar does a pretty good job at searching. I typically start with google before using pubmed.
Then you need a place to store your papers. I like to use F1000 workspace.
If your doctor is not helping you, get a new one, preferably in a big city with a university-affiliated hospital. These MD deal with highly educated levels of patients and colleagues, and they like it.
True, but
https://en.wikipedia.org/wiki/Sci-Hub
sad that it needs to exist, but good that it does.
It does, plus it has the great advantage that it will find a PDF of the paper posted by the author (or someone else) on a webfolder somewhere. Pubmed only links to the "official" paper publication, plus some open repositories in some cases.
I've done this with various doctors, trying to figure out what the hell is wrong with me. In my experience, as soon as you start telling them they just think you're a crazy hypochondriac who sends too much time on the internet.
One should be able to then filter the disease database based on symptoms. Doctors seem to do this in their head, but they are not comprehensive stores of information. I suppose the problem is in the encoding of symptoms, it's not that simple.
We are by definition reacting different, and unfortunately statistics are not helping on this case.
Basically, we have:
- too many illnesses (I guess 10% of top common health problems, covering 90% of all problems)
- for each illness, we have N number of symptoms (which unfortunately all or only a subset of this can occur)
- then we have fake symptoms (statistically out of threshold values but we are living fine with them)
this is generating a big number of combinations.
With this much combinations, it is requiring extensive amount of tests.
As everything health is also optimized for the greater good. Which requires optimum cost management.
So basically medicine today, with statistical approach, is happy to skip 1%, if it can fix 99% with 90% less cost.
I think this is probably the easy thing to fix when it comes to searching, as you could pretty much leave out the common diagnoses as they'd likely have been tried - Imma call this the "Dr House, is it Lupus?" filter.
From there, you could have "try this" filter, and see what the results are. I wonder what the overlap is between tests and symptoms, but surely with 10 tests and 10 symptoms, most illnesses could be mostly identified?
Is this database open? If so, anyone in the same situation as the daughter in this article could spend the hours, rather than hoping a professional will. Not to self-diagnose, but to narrow down the list to a number of candidates the professionals are willing to look through. Sure, what takes the M.D. 6 hours might take me 40 hours, but if the alternative is 10 years of suffering for someone I love, it's easily worth doing.
On a similar note, I have combed through a bunch of research on a particular type of medication recently, and I hope the fruits of my labour will pay off. Time will tell. Either way, I have learned a lot.
Once you are dealing with somethibg that is difficult to diagnose and/or resistant to treatment (I might argue the two are the same thing on a fundamental level), a surprisingly large portion of medical care turns DIY. They never tell you this but unless you are actually made of bucks and can visit the best specialists in the world, it won't take long until you know more than the doctors you meet about the specific problem you're dealing with.